Friday, March 18, 2011

Proud to be puke free

I have so much exciting Madie news to report I’m not sure where to start.  First, we got a call last week that we had finally gotten approval for Madie’s stroller/wheel chair and her gait trainer.  We are so excited to see how she does with both.  We have been using a chair that OCH let us borrow and we are so very grateful to have had it.  Madie loves to be outside and since she weighs 27 pounds carrying her around the entire time isn’t really an option.  The only problem is that it weighs a ton!  Madie’s new chair is very lightweight and it will give us the freedom to load and unload it easily so we can start taking Madie to a lot of new and exciting places.  Pretty sure a trip to the zoo is in our very near future!  We are hoping that the gait trainer and chair will both be delivered with a couple of weeks.
Madie is doing GREAT on her new formula.  She hasn’t been throwing up at all, PRAISE THE LORD.  We have gotten the length of her feed down to an hour and fifteen minutes, and our hope is that starting this week we can get her feed down to one hour.  This is a goal we have been trying to reach since Madie had her G-Tube surgery at the beginning of October and it feels amazing to be so close to meeting it!  Once we meet that goal I suppose we will shoot for an even shorter feed with longer time in between.  Now that we are getting Madie closer and closer to an hour feed she is also making BIG improvements accepting things by mouth.  This week Madie has taken drinks from a sippy cup, eaten animal crackers and ritz crackers.  She still isn’t ready to have a tube feed replaced with an oral feed but we are moving in the right direction.  Matt and I continue to be amazed by her progress and we are so thankful that God continues to show us that hears all of our prayers.  Ashley, M’s speech therapist also got her to take a couple of sucks on a pacifier.   Ashley said we are going to have to have a big party when we finally get to remove Madie’s G-tube.  I think big party would be a pretty large understatement. 
We hear Madie make new sounds and noises everyday but she is still not using words besides an occasional Mama or Dada, which she doesn’t repeat consistantly.  She is very much aware of what you are asking her though.  If you ask Madie where Mommy, Daddy, Molly Michael, Jenny, MomMom, Pop, etc. are, she will immediately turn her head, find you and give the biggest grin.  If we are sitting in the living room when Matt gets home from work and I say “Daddy is Home!” she will sit up, smile and look at the front door.  We have started trying to teach her some sign language and if you say “eat” she will sign “eat”.  She is so smart and you can see the wheels turning.  We know that big things are in store for her.
Occupational Therapy and Physical therapy are also going really well.  She gets a little stronger every week and is becoming more tolerant of her tummy time.  She still is not a huge fan but we are seeing improvements and that is all that matters.  While Madie was doing some exercises on a therapy ball and Molly Michael was “assisting”  I mentioned that we used to spend an entire 30 minute therapy session just trying to get Madie to stretch her arms and legs out and lay on a therapy ball.  To remember times like that and see her know is incredible to say the least.  We firmly believe that Stephanie(OT) and Phil(PT) are such blessings to Madie and the results we are seeing back up that belief.  We are also BEYOND blessed to have Madie’s nurse Jenny.  She takes such wonderful care of Madie and Matt and I are so grateful to know that she loves Madie and wants to be part of her getting better. 
This past week has been Molly Michael’s spring break.  She got to spend one day at the office with Daddy, which from what I hear was filled with many tiny candy bars courtesy of all the sweet ladies that work with Matt.  She and I spent one day together in Longview.  We had donuts for breakfast and then went to The Mud Hut and painted a few ceramic masterpieces.  Then Wednesday we spent the day at home because Molly Michael told me that if we didn’t leave the house she didn’t have to brush her teeth.  EVERY day we argue about her brushing her teeth.  I tell her every day that she has to brush at least morning and night EVERY DAY, but for some reason it isn’t sinking in.  I am sure I am not the only mother having this problem but man oh man it is frustrating! 
Yesterday, Matt and Molly Michael went camping with our friends the Ellis’.  Madie and I stayed home because they CAMPING, like camping with no electricity, in a tent.  So I took one for the team and stayed back in the AC with my bed, laptop, cell phone, iPad, DirecTv and other fantastic amenities that they are without.  They have been gone less than 48 hours and I am beyond ready for them to come home.  Madie and I have enjoyed our one on one time but we want Daddy and Molly Michael home because we are lonely without them.  It has been way too quiet around here! 
I have a new prayer request for all of you.  A family that we go to church with and that were a source of strength for us after Madie’s accident needs your prayers.  Their son Anthony has been transferred to Children’s in Dallas for the second time in two days.  You can read his complete story and get updates
here.  Please continue to pray for and follow Charley Rae’s story as well.
Also I sit here typing this update and watching our local news, they just did a story that a 2 ½ year old drowned tonight in his family pool.  Even though I have no clue who these people are, PLEASE say a prayer for his family that they will seek and find comfort through God during this horrible time.  The news mentioned that he was playing outside with his 4 year brother and his mom went inside for just a moment.  My heart hurts for this family and I am reminded once again what a true miracle I have sleeping in the room next to me.  Perhaps, I’ll sneak in one more kiss and quick thank you prayer to the Big Guy upstairs  when I go in to give her her midnight meds…
With greatest gratitude,

Kristin, Matt, Molly Michael and Miracle Madie               

Thursday, March 3, 2011

We are family, hang up on the ceiling Sheree

I started a post on the way to Dallas this morning but Madie decided that she thought that wasn’t a very good idea and demanded my attention.  So I will start over…
We headed to Dallas this morning because Madie had a follow up with her GI doctor.  Her vomiting has really improved so Dr. Semrin decided to try her on a new formula.  So we are back to a “normal” formula.  Not even one that is concentrated.  Hopefully we will have a smooth transition and won’t have to take any steps back in her feeding schedule. Please pray that we don’t see an increase in her vomiting!  She is doing REALLY well with her “eating”.  She is becoming much more accepting of different textures.  We have been giving her Mum Mums.  If you aren’t familiar with the Mum Mum, it is a flavored rice biscuit that kind melts in your mouth.  She prefers the strawberry ones and I must admit I tried one and they aren’t too shabby.  I’ve had a few myself.  She is opening her mouth for and taking bites from a spoon as well.  We are still working on drinking from a cup but she still hasn’t quite figured out how to suck just yet, but she is getting close!  We see small advancements in Madie almost daily.   Her coordination is getting better and she reaches, grabs for and picks up everything.  She laughs more and recognizes familiar friends and family immediately.  She will even let other people hold her…if she knows you really well.  We are patiently, but anxiously, awaiting all of the necessary approvals for Madie’s new equipment that will really help her learn a few new tricks.   
We have been taking Madie to Kindermusik and she LOVES IT!  I honestly feel like it is just as important as her PT, OT and ST.  She smiles in amazement for 45 minutes every Wednesday morning.  She laughs and gets so excited when everyone sings.  At one point last week while the entire class was singing shoo-fly , she got so excited that I seriously thought she might bounce right of my arms.  I really need to get her on video so you can see what I mean.  If you have small children, you should REALLY consider signing up for Kindermusik, you can thank me later.
Now a funny story about Molly Michael.  She is in her second year of dance and God Bless, Kristi, her dance teacher.  Molly Michael is FULL of energy as are the other little girls in her class.  Their recital is in April and they have been practicing their little part in the finale.  Molly Michael is showing me her moves and tells me that they will be dancing to “We are family, Hang up on the ceiling Sheree”.  I crack up every time I think of her singing it.  She is such a funny, smart, spunky little girl and we are so lucky to have her.  
Finally, we made a little detour on the way to Plano today.  We stopped in Dallas at the Ronald McDonald House to see Charley Rae.  She looked great!  Charley was just discharged from Children’s yesterday but she will have to stay in Dallas because she needs dialysis 4 times a week.  It brought me such joy to see two wonderful examples of God’s work and the power of prayer sitting side by side.  Please pray for this family and follow their story on her caring bridge page.  Here is a picture of Marshall's Miracles.  Madie was very excited to see Charley and kept trying to grab her face.  This is the only picture Matt got where they were both looking and Madie wasn't trying to caress her cheek.  

Please pray for Madie’s continued healing.  I am still amazed at the number of people who ask how Madie is doing and let us know that they are still praying for us.  We are so grateful for each and every one of you.  God lets us know every day that he is still listening!

Here is a funny little picture of MM.  This happy girl is having the time of her life playing in a mud puddle in our yard.  This same sweet girl playing in the mud is so girly that, with the exception of an occasional blue jean day, she has not work a pair of pants to school all year.  Only skirts!  LOVE LOVE LOVE her! 

With greatest gratitude,
Kristin, Matt, Molly Michael and Miracle Madie